Man cycling from Milton to Leith for ALS, which killed father last year

Jeff Burnett isn’t training for his nearly 200-kilometre single-day bike ride for ALS.

And there’s a reason.

The Burlington resident, whose father Frank died from the fatal nervous system disease on July 1, 2020, in Owen Sound, said people never expect an ALS diagnosis or are prepared for the brutality of the disease and what lies ahead on any given day as it progresses.

“This is what it’s about is people are diagnosed with disease, so if I look at ALS, it’s fatal, it’s terminal, there’s no way out. And on social media, I documented my father’s progression, how it affected my family, me; it’s very emotional. And every day was different. It was unpredictable. It’s very savagely raw,” Burnett said in an interview.

“I looked at my father with worry and respect – not knowing what was going to happen next. My father was always about facing adversity. The bike ride is more about the unknown and facing that challenge. When people are given a diagnosis, they’re not prepared, they weren’t training for it. So, therefore, I’m not going to do it.”

Burnett, who owns a social advertising agency, is planning to depart from his childhood home on Middleton Crescent in Milton at 6 a.m. Friday and end his ride later in the day at the Leith Cemetery, where his father is buried.

He’ll take the same backroads that Burnett, his father, mother and brother travelled multiple times when they would head up to the Owen Sound area to visit extended family and friends.

Burnett will be live-streaming his entire ride on Facebook.

The goal is to raise awareness about ALS and the toll it takes on those diagnosed with the disease as well as their family members and caregivers. All money raised will go to the ALS Society of Canada.

Jeff Burnett says his father Frank, who retired at Leith before moving into Owen Sound, was his hero and best friend. He was an optimistic man who loved to smile and adored his family, including his grandchildren.

Although he was in his 70s, he looked and seemed much younger, Burnett said, and he always remained active.

Frank was diagnosed with amyotrophic lateral sclerosis, also called Lou Gehrig’s disease, in April 2019. The disease affects the nerve cells in the brain and spinal cord, eventually causing total loss of muscle control. There’s no cure.

Burnett said for the first five months after the diagnosis, his father seemed to be doing OK.

But things started to go downhill – and fast – in September 2019.

Frank was getting around with the help of a walker that month and in October, he was forced to rely on a wheelchair because his legs could no longer support his weight.

By November, ALS Canada provided the family with a Hoyer lift to help Frank get from his bed to his wheelchair as he and his wife could no longer do it themselves with a slider board alone.

Things got progressively worse in December and on Jan. 22, 2020, the family made the difficult decision to move Frank to full-time long-term care.

Burnett documented the disease’s progression on social media to show the raw and painful reality of ALS, which he calls a murder sentence.

“Like a hammer or a gavel in a courtroom, the sentence is delivered: murder. And there’s really no turning back. My father was given the same sentence – you’re going to be murdered,” he said.

“The word murder has such a negative relationship in people’s minds and thoughts of what that entails. ALS is savage. It slowly suffocates you. It pains people around you. The ripple or wave that a murder sentence, like ALS, has is just astronomical. And the problem I have with ALS is it always wins.”

This will be Burnett’s second ride from Milton to Leith for ALS. He pedalled the same journey about a month after his father died, completing the route in about 10 hours.

For more information about Burnett’s charity ride, including how to donate and ways to track his progress, visit www.theoneandonly.ca.

Jeff Burnett enters Owen Sound during last year’s charity ride for ALS. SUPPLIED